18 comments:

This is a child who will never cognitively develop past infancy. She, if she had been left 'unmessed' with, would have grown and developed physically into a normal woman, with the mind of a 6 month old.Caretaking a fully grown, completely incapacitated person is extremely difficult. I know, because I've done it. The weight of a fully grown body can facilitate the development of bedsores, pneumonia, and make physical therapy very difficult.On the surface, what her parents did is appalling, yes. Dig a little deeper, and she will be more comfortable, because she'll be smaller and lighterweight, and less prone to weight related conditions.It will also be much easier for them to put her in a stroller and take her outside for fresh air and sunshine.Remember, it's not s if she's a child who has had her potential future ripped away from her. She never had it in the first place. Her parents were also concerned about the potential for sexual abuse, pregnancy, the discomfort from menstrual periods.

I do understand how awful what they've done seems. I am not sure that I would have been able to do the same thing, if I were in their shoes. But I don't think they are monsters.

i just don't really know what to say. something about the way they talk about her as their "pillow baby" kind of gives me the creeps. i don't know. i'm sure it's true, that she can't possibly cognitively develop any further...but i keep thinking; and if it wasn't? yeah, shades of terry Schaivo, but...

The doctors are, any doctor who went along with that is right up there with that marital rapist, sterilising repug politico that's still hanging around somewhere in Die Heartland, morally and humanity-wise.

Her parents were also concerned about the potential for sexual abuse, pregnancy, the discomfort from menstrual periods.

Yeah, because no one ever sexually abused a child before.

3- Large breasts could “sexualize” Ashley towards her caregiver, especially when they are touched while she is being moved or handled, inviting the possibility of abuse.

Fucking assbackwards perves. Who suggested that little turd of a mouthful to them? Who looks at a mentally disabled child and promptly just goes derbyshire on her, just thinks "hmm, in a few years she'll have Teh B(.)(.)BIES! And then her carers will just forced to abuse her, better just chop those puppies off..." Is this ashley girl the child of mr and mrs Tom Swift, because I've never heard such a freaking modest proposal in my entire life

This is ghastly, & one more reason for skepticism about the way the medical ethics review process (there was one in this case) currently operates. I’m sure I sympathize with RT’s experience, but it isn’t acceptable to amputate a person’s body parts in order to make things easier for caregivers, insurers, etc. Arguments from the person’s own best interest have to be interpreted very, very narrowly – it begs to question to ask how she should be treated, given the way she can expect to be treated –, which they clearly weren’t in this case. This isn’t just a matter of inchoate unease; the ”ethics consultant” & review committee in this case clearly have gone far beyond what most ethicists & moral philosophers would find acceptable, & they’ll presumably have a lot of very hard questions to answer. Given the history of attitudes toward the sexuality of children & handicapped people, it’s difficult to avoid the conclusion that the impulse to desexualize this young woman has deeper, much murkier roots than the rationalization that’s being offered. The danger that people in her condition may be sexually abused is real, but the idea that this should be addressed by amputating her breasts is simply incomprehensible. Also bizarre that the parents should have thought to create a website & blog to publicize what they’re doing.

(Some of the) comments at BFP sadly are entirely unsurprising. Some people really are wrong about everything.

Thank you for this. You are totally, totally right. I have read so much out in the blogosphere that smacks of "but but but her parents seem so niiiice"!

As a woman with a disability who has had multiple surgeries, reading people who claim to be our allies go crazy with what ifs is just breaking my heart.

Thank you so, so much, for talking straight up about how invasive and horrible this is no matter how sweet Mommy and Daddy are.

Because when you consider the world for PWD, it's a world where Mommy and Daddy often consent to shit they understand nothing about, or even kill (peek at my lj under the link "pwd deaths") and since it's "mercy" it's okay.

It's so, so hard to get people out of that vein of thinking. If it can be used to justify murder, surely one little hysterectomy is okay!

And people like me bury our heads in our hands and weep as Feminism kneels before the sweet tyrant Mercy.

well EXCUSE ME but isn't MAJOR SURGERY to REMOVE SEXUAL ORGANS just about as INVASIVE as you can fucking GET??

i mean, besides everything else: hello. major surgery -hurts-, in the recovery. you are doing this on healthy organs to someone you have already deemed a mental infant, so she has no way of possibly understanding -why- this is happening, much less of course consenting.

that doesn't mean she can't FEEL, fucksticks.

or OR that HELLO a "child" can't or won't be raped.

if it's fear of pregnancy, know what? at worst there were less invasive ways to deal with that, even surgically, yes. and you didn't have to do it -right now.-

you know what it reminds me of? ever read "Johnny got his gun?" it gives me that same sick feeling.

because i mean, yeah, wouldn't it make it even -more- convenient to remove her arms and legs? even less weight to carry! hell, after all it's not like she -needs- them.

and the whole, o well, it's expensive to get fulltime care; how much did all this major surgery cost, exactly? and how is this--agggghhh.

and something else:

i am sure that this was a from-birth developmental disability. but y'know, i can't help thinking: parental neglect/abuse can exacerbate that as well...

it's too gothic to even contemplate, the idea that keeps worming its way into my head.

but okay, there is also this: besides the disability, there is the fact that she is their child. i.e.: their property. Technically, she's not supposed to be able to "consent" to a whole bunch of shit, even if she were a perfectly normal nine year old.

know what i'm saying? what kind of precedent is this setting?

and what you said over at your spot, trin: why are feminists, the same ones who scream from here to Christmas about all sorts of more easily identified rape, identifying with the -parents,- and not with the girl whose body is being invaded? do they not know the history of nonconsensual surgery on women? do they think that the fact that this little girl can't consent means that anything her parents decides to do is okay? for their convenience? say, really nice people commit more traditional forms of incest, too. and frankly, the whole "pillow angel" thing...

"i mean, besides everything else: hello. major surgery -hurts-, in the recovery. you are doing this on healthy organs to someone you have already deemed a mental infant, so she has no way of possibly understanding -why- this is happening, much less of course consenting."

Yup. If you understand that rape can hurt her, and you're concerned about that, why can't you see that violating her by tearing her body open and REMOVING SEXUAL ORGANS, as you say, is violation too? Oh, because it makes her easier to take care of!

I'm sorry rootietoot, but what you are advocating/defending is violation that honestly is not all that hugely different from rape. There is no "gray area." You don't get to violate people's bodies to make your job easier.

Guh. Just looking at that comment for too long brings back traumatic memories.

i mean, i remember when my mom got a hysterectomy, and again later when she had breast surgery for the cancer. it wasn't like: zap! organ magically removed! all better! she was in at least some pain for weeks afterward. do they think the "pillow angel" just won't notice? they know what "hurt" is, even if they don't have the words for it, do infants.

I'm sickened. Yes, she might be at risk of sexual molestation; many disabled individuals are. But the problem is not their bodies; the problem is the individuals who perpetrate those assaults and the lack of protective mechanisms put in place. I find it hard to believe that the best way to protect this child was to cut off her breasts.

I'll admit to being on the side of the fence on this one that says that, while it disturbs me on a visceral level, I'm not sure it was the wrong choice. I think we must have read different articles, though, because when I first heard about this story, the emphasis was definitely on quality of life for Ashley, and the threat of sexual abuse wasn't even mentioned.

I'll definitely agree that the whole thing "freaks me out," to borrow from belladame222. I think that this is pretty complicated, though- this surgery will improve Ashley's quality of life. Her condition is not "fixable." It's disturbing, but I'm having a hard time condemning the parents for taking action that will simultaneously make it easier for them to care for Ashley and will improve Ashley's quality of life.

What sorts of major surgery have you had? How painful was the experience? How painful was the recovery? Did you consent yourself, or did others consent for you? If others did, did it make you uneasy in their presence later?

How would you feel if people who were not you consented to a vasectomy for you?

This girl is capable of feeling pain. This girl is also capable, more than likely, of some form of traumatic memory. I've known *young puppy dogs* that had been abused, and whose manner clearly demonstrated that they knew someone had hurt them. They became timid, fearful, scared -- or violently aggressive.

Don't assume that someone who is not "blessed with reason" cannot experience trauma.

Like I've been saying, if you assume as people rightfully are that raping her would be a terrible thing, I don't see why assuming that the pain of surgery and recovery, and living for the rest of her life in a stunted body, would somehow be magically untraumatic because someone out there supposedly "had her best interests at heart."

If you have had surgeries, how much chronic pain has resulted from them?

No one seems to want to deal with the possibility that her pain might be more than momentary.

Chronic pain is worth risking if you're going to die or seriously suffer or be harmed without intervention. But to just roll dice like this because otherwise she'll OMGZ MENSTRUATE? I'm not seeing it, and I think a lot of the defense of these parents probably comes from disgust at menstruation, honestly.

When... how would cleaning that up be any worse than cleaning up feces and urine?

I've never had major surgery, just a few minor surgeries. I am, however, aware that there is the potential for complications, as with any surgery. I'm also not suggesting that Ashley won't suffer any pain from the surgery. There's no way to know that for sure how she'll feel as a result of this. Asking if I consented to surgery isn't really important in this case, since (I like to think) I've developed beyond the mental and emotional capacity of a three-month old. Ashley won't. That's a pretty significant distinction.

Ashley can't consent, and will never be in a position to give informed consent to anything.

This means that it's up to her parents to try to figure out what the best thing for Ashley is. They had to make a measurement: Do the risks involved in the surgery surpass the benefits?

I understand that you disagree with their choice. I think, however, that this issue is a lot more complicated than you're making it out to be, and I don't think you're being entirely fair in your assessment of the situation. I think that this is a pretty grey area, and it's not the sort of situation that we've dealt with before, so it's entirely possible for rational, well intentioned, good people to come to different conclusions.

Asking how I would feel if someone consented me to a vasectomy misses the point, too. A better question might be how I would feel about a similar surgery, if I were in Ashley's position. Honestly, if I were in Ashley's position (or, more accurately, thinking about it right now as though I knew I were going to be reborn in Ashley's position), I'd want my parents to get that surgery done. The idea that I'd be 36 and 170 lbs or whatever, but the mental and emotional equivalent of a 3 month-old, and that my parents would have to try to figure out ways to take care of me in that condition? That's heartbreaking.If artificially restricting my growth development makes it easier for my parents to care for me and has a high probability of improving my quality of life, I'd want them to do that. If it means that they can better take care of me, that it reduces the chances for long-term health complications, that it increases their ability to give me the physical attention that I, as an infant, will crave for the rest of my life... I'd be all for that.

I'm not sure why you're pointing out that she can feel pain, by the way. I've certainly never said that she was incapable of that, nor have I seen anyone else suggest that. In fact, one of the reasons that I thought the surgery was even being considered was because of concerns about her comfort in the future. As she grows older, if they didn't artificially restrict her development, her inability to move would have made her prone to bed sores, for example, and she'd have been a 3 month-old trying to cope with and understand the physical changes that come with aging. The question, as I read it, was never "can she feel pain," but, "what will give her the best quality of life?"

The reality is that none of us can know what life is going to be like for this girl, becuase none of us have been stuck at the mental level of 3-month-old for the 70-some-odd years that she's expected to live. I haven't got a clue what it would be like to go through puberty as a 3-month-old.

For the record: Rape isn't wrong because it's traumatic to the victim. It's no less wrong to rape someone who is comatose, just because the victim will never know. It wouldn't matter to me whether Ashley would be traumatized by the potential rape- that's not why it's wrong. It's wrong because of the violation, not the trauma that results from the violation.

As far as her "living in a stunted body for the rest of her life" being traumatic- I'm sorry, but I don't see how that could possibly be traumatic to her. An infant isn't going to have any clue that she's in a stunted body. If anything, the strangeness of being mentally 3 months old but being in the body of, say, a 30 year-old seems like it would be more traumatic, to me.

I think you're really mischaractorizing the positions of the people that've supported these parents choice when you reduce it to "OMGZ MENSTRUATE?"

There's a hell of a lot more going into a choice like this when you're considering the health and well being of a person who will spend roughly the next six decades as an infant, and I don't see any indication that their primary concern was cleaning up their daughter during her period.

no; as kh noted, it's murkier than that. and no, as gennimachmahon noted over at ilyka's, one can't park it all at the parents' feet; it's the same mechanistic, sexist, weirdly "innocence"-fetishizing society as represented through the system that allowed, hell, encouraged this.